LETTER FROM LEADERSHIP
Tony
Lahnston 2022-2024 Board of Trustees Chair Pulmonary Hypertension Association
Matt J. Granato, LL.M., MBA President and CEO Pulmonary Hypertension Association
Dear friends,
We’re pleased to share the Pulmonary Hypertension Association 2023 Annual Report. This year’s report shows how PHA helped the PH community Live PHearlessly. The report shows PHA’s impact on people with pulmonary hypertension, caregivers and health care professionals. It also highlights our work and achievements. The report reflects the theme our 2023 PH Awareness Month Campaign, which was “Live PHearlessly.” In the campaign, and in this report, members of the PHA community show how they live PHearlessly thanks to scientific advancements, support and education.
In 2023, we continued PHA’s long tradition of providing invaluable education resources for patients and professionals alike. We introduced a Spanish-language version of Navigating Pulmonary Hypertension: A Guide for the Newly Diagnosed and updated pages on our website for each FDAapproved PH treatment. We relaunched and rebranded our daylong free education events, previously known as PHA on the Road. The new PHA Connects: PH Community workshops in San Diego and Boston drew more than 150 people combined.
We also made it easier for patients and families to participate in support groups, wherever they live. We merged our telephone support groups with our nationwide support group program, allowing participants to join easily through Zoom.
For health care professionals, our education efforts culminated in PHA’s PH Professional Network Symposium, attended by a record 600-plus people. We were proud to present a session by Marc Humbert, MD, the primary author of new PH diagnosis and treatment guidelines.
To fulfill our mission to improve and extend the lives of those with PH, we also focused on research and treatment in 2023. For the first time, two PHA-accredited Pulmonary Hypertension Care Centers expanded from Regional Clinical Programs to Centers of Comprehensive Care: Ascension St. Vincent in Indianapolis and Yale New Haven Hospital in Connecticut.
We also worked to refine our accreditation guidelines for pediatric care centers and introduced a new research grant: the Early Career Mentored Scientist Award.
In our advocacy efforts, 2023 marked a breakthrough. For the first time since it was introduced in 2017, the Safe Step Act moved out of committee to the full Senate floor, thanks to PHA advocates. While there is more work before this bill becomes law, we celebrate this milestone achievement in our work to ensure accessible, affordable treatment for people with PH.
The achievements reflected in this report would not have been possible without vital contributions from our community. Thousands of people participate in PHA O₂breathe fundraising walks and community events to support our mission. Many more give regularly through regular payroll deductions, monthly contributions, memorial gifts, estate plans and campaign appeals, such as Giving Tuesday and quarterly fundraising campaigns.
Our 2023 achievements also reflect the selflessness of our many volunteers, including patients, caregivers and PH professionals. We also owe our success to those who serve on our committees and the Board of Trustees; share their expertise in educational events; and our corporate partners. Above all, we could not fulfill our mission without the dedication of the talented PHA staff.
Please join us in celebrating our 2023 achievements.
Tony Lahnston
Matt J. Granato, LL.M., MBA
AT A GLANCE IN 2023
2,796
1,697,611
46,361
Living PHearlessly With Soul Mate By Side
Gary Bruce co-leads the Pulmonary Hypertension Association Dallas Support Group with his wife Debra Hines-Bruce.
BY GARY BRUCE
FAVORITE RESOURCES
PHA conferences
Support groups
O2breathe walks
PH Community Workshops
When I was diagnosed with PH in 2015, I felt lost and scared. I found my community when I joined a PHA support group. Then I met my wife at PHA 2016 International PH Conference and Scientific Sessions. That conference will always be special to me. This journey can feel isolating at times, but with Debra by my side — someone who truly understands the ups and downs of pulmonary hypertension — I feel heard and understood.
In 2017, Debra and I became co-leaders, and grew our numbers from a handful of participants to 35. My favorite thing is putting smiles on the other patients’ faces. By helping them through their journeys (medication, treatment and oxygen questions), they’re helping me be a better person. We’re a family.
I recently attended a PHA Connects: PH Community Workshop. Meeting new people at the support group leader training and having dinner together was amazing. We shared our progress with PH and connected over the medications and treatments we use. Debra and I made friends with a couple from San Antonio who also are support group leaders. Those types of connections make you proud to be accepted.
I felt the same openness at the conferences I’ve attended. Debra and I have participated in the fashion show, and at PHA 2022 I led an all-male support group about relationships and how to remain intimate with PH. At PHA 2018 I spoke about how to date with PH. This disease controls your body, but not your mind and soul. I feel like it’s my job to learn everything I can and help others take back that control.
PHA has more reach and information about PH than ever before. When someone has a question about PH, I tell them to head to the PHA webpage. There’s so much credible information about medications, treatment and medical intervention. And I have used those resources as a patient and caregiver.
The PHA Facebook page keeps us up to date on events, community stories and research advancements. PHA’s monthly Leader Letter updates support group leaders on meeting opportunities, resources and more.
One of my favorite events to organize is the Zebra PHest O₂breathe Walk. In 2023, we raised raised $10,000 to benefit PHA.
PHA has provided Debra and me with so many opportunities to be involved, make a difference and learn about medical advancements. Those opportunities have improved our quality of life. The education and connections make life worth living.
DIGITAL
PH Community Workshops
San Diego & Boston ATTENDEES
‘I
Patient Stories Inspire Marketer To Fundraise PHearlessly
Casey Perez was diagnosed with pulmonary arterial hypertension three months after her wedding in 2018. The 32-year-old lives in Bradenton, Florida, with her husband and works as a marketer.
BY CASEY PEREZ
Many questions and worst-case scenarios ran through my mind when I was diagnosed with PAH.
To combat my fears, I found solace through my faith in God, my supportive husband and family, my amazing doctor and care team, and the Pulmonary Hypertension Association.
I turned to PHA’s invaluable resources on how to live better with PH. PHA’s Right Heart Blog and quarterly member magazine Pathlight were the resources I clung to the most because they had advice from other people with PH.
I was grateful to have access to people who intimately know what it’s like to be in my shoes. My friends and family sympathize with me and see my struggles, but there is something beautiful about hearing from and being with people who know exactly how it feels to live in a body with PAH.
My family and I started to attend PHA’s O₂breathe walks in 2022 to meet members of the PHA community and be part of something that was making a difference. With this disease you often feel helpless and participating in the walk felt like a tangible way to give back.
We explored ways to raise the most money in a short period of time. Initially, my sister and I baked “Pies for PH” in exchange for donations, but the abundance of orders became overwhelming.
So as a family, we pivoted to a garage sale. Neighbors, members of my church and work colleagues donated furniture, knickknacks and home goods to sell. The garage sale raised $1,500 for the 2023 walk, almost doubling our profits from the pie sales the year before.
This is now an annual endeavor. Our 2024 sale raised $4,475, which our team, “Her PHight is Our Fight,” donated at the 2024 walk. We have already received household goods for our 2025 garage sale.
At our last garage sale, one shopper said her brother was experiencing symptoms that we had described. She said she would take him to the doctors for further testing, and I recommended some tests he should ask for. Then, I learned another attendee participated in the first Remodulin (treprostinil) trials, which was so cool to connect over.
Attending the O₂breathe walks is my way of connecting with PHA and the local PH community. Making new friends and fundraising with my family and friends makes me feel supported and less isolated.
My family and I had no knowledge of this disease before I got diagnosed and found PHA, but now I raise awareness and help others. It means so much to me and my family, and we look forward to our PHA fundraiser every year.
66,502
15,134
‘Advocating Keeps My Passion for Nursing Alive’
After participating in my first PH Professional Network Symposium in 2017, I made it a priority to attend the biennial PHA event.
Pulmonary hypertension is such a niche field, but I feel part of something larger at the symposiums. Health care professionals from all over the country and world attend, so I can connect with others who understand exactly what I’m saying and learn about innovative research. I am exposed to what works for other care teams and apply that to my practice.
I first participated in Advocacy Day in 2023. It was refreshing to feel like I was making a difference for the patients I serve.
As health care professionals, we struggle every day to ensure our patients get the right drugs. We know our patients well and what’s working and what’s not. Yet when we prescribe a drug, it’s up to the insurance company to decide whether patients receive the medication. We need a better way to ensure our patients get what they need when they need it. They need the right drug now, not in six months when we’re tied up in appeals.
My favorite part of Advocacy Day was banding together with other providers in my area (Texas and Louisiana) and talking to the lawmakers who represent our states in Congress. I felt empowered by trying to make a difference in my patients’ lives.
Every time I saw patients after Advocacy Day, it felt amazing to say, “I lobbied for the Safe Step Act. I feel the same way you do. I’m on your side and I’m going to keep advocating until there’s change.”
BY DONNIELLE TURNER
Sometimes patients can feel isolated so it can be uplifting to know their health care teams are in their corner, fighting for treatment access. Advocating keeps my passion for nursing alive.
Since I started working at Houston Methodist, I have been a professional member of the Pulmonary Hypertension Association. From the beginning, I learned I couldn’t do my job without a professional membership because of all the resources.
My colleagues and I refer patients to PHA support groups; the Empowered Patient Toolkit; resources for newly diagnosed patients; and PHA-accredited PH Care Centers. We use the PHA website to learn about available research grants and participate in the mentor/mentee program. I currently serve as a mentor for providers who are new to PH.
I feel like you can’t work in the PH field without being involved in PHA. The events and resources bring the PH community together and are exceptional education tools for patients and professionals.
Donnielle Turner, BSN, has worked as a registered nurse at Houston Methodist since 2012.
Treatment Access
‘It’s helpful being around other people who ... understand what we go through with symptoms, medications and side effects. It’s important to attend a support group meeting so you don’t become isolated.’
EVELYN
MITCHELL, SUPPORT GROUP LEADER, LEXINGTON, KENTUCKY
Peer Support
TREATMENT ACCESS INQUIRIES RESPONDED TO (BY PHONE OR BY EMAIL) 181
UNIQUE PAGE VIEWS OF THE FINANCIAL ASSISTANCE HELP PAGE 4,459
ADVOCATES 232
MESSAGES TO CONGRESS 881
ADVOCATES WHO MET VIRTUALLY WITH LEGISLATIVE STAFF 14
LEGISLATIVE OFFICES VISITED VIRTUALLY 26
PHPN ADVOCACY DAY ATTENDEES 81
OFFICES VISITED DURING PHPN ADVOCACY DAY 48
IN-PERSON VISITS WITH OFFICES ON THE HILL (INCLUDING 48 FROM PHPH ADV DAY) 112
Passion for Lung Physiology Leads to Research Grant
Roopa Siddaiah, MD, FAAP, received PHA’s Early Career Mentor Scientist award in 2023. She received a $65,000 grant to improve clinical outcomes for premature babies with pulmonary hypertension.
BY ROOPA SIDDAIAH
Growing up with a strong family history of asthma, I experienced the challenges of dealing with a lung disease and became interested in learning about lung pathologies. I found my passion for lung physiology, specifically in newborn babies, during my residency, and decided to pursue a career in pediatric pulmonology.
In the early years of my research, my team and I looked for biomarkers in babies who developed PH. Discovering those markers could allow doctors to identify much earlier babies at high risk for developing PH.
In 2015, we started looking for biomarkers that differentiated preterm infants with PH from those with other lung diseases. After four years, we marked a panel of micro-RNAs that control gene expression and indicate the presence of PH. With further studies, we recognized that the biomarkers could be used for early identification and screening.
In those studies, we used tracheal aspirate, secretions from breathing tubes, to look for the biomarkers. We then looked for a less invasive way to collect samples. We collected saliva and tracheal aspirate samples from babies to see if the PH biomarkers were present in both, and they were. We were excited because saliva can be collected easily from larger patient populations, in the privacy and comfort of their homes.
In 2022, we identified a key marker called micro-RNA-29a, which plays a crucial role in the inflammatory process and regulating development of new blood vessels. Then we started studying micro-RNA’s impact on endothelial cells. Those cells line blood vessels and control blood flow. Dysfunctional endothelial cells can lead to high blood pressure and cardiac stress, which can cause PH.
I applied for the Early Career Mentored Scientist Award in 2023 to bridge the monetary gap while I resubmitted my research to the National Institute of Health’s Early Career Development grant (K grant). I received approval for a K grant soon after and fortunately could use both funds to expand my research.
PHA’s grant helps cover supplies for the cell culture models — saliva from samples in the population for micro-RNA research. The grant also pays the salaries of our research assistants. We hope to publish our findings by fall 2024.
Since starting my career as a clinician in 2012, I have gradually transitioned from a clinician to a researcher at Penn State Health. The Early Career Mentored Scientist Award allowed me to develop my skills to make my mark as a researcher and bridge the gap during my transition. My research is my passion, so I’m grateful to PHA for helping make this a reality.
Investing in PH Advancements
The Pulmonary Hypertension Association awarded three research grants in 2023:
Innovation in PH Research Award
The award supports new areas of PH research that couldn’t have been explored without PHA funding. The projects must address new scientific or medical paradigms, challenge a current paradigm, or examine an existing problem from a new perspective. Up to $60,000 a year for two years is available. The recipients were:
Adam Andruska, MD
Stanford University School of Medicine
“T-cell vascular signaling as a therapeutic target in PAH.”
Ke Yuan, PhD
Boston Children’s Hospital
“Perivascular cells contribute to flow-induced PH.”
Early Career Mentored Scientist Award
The grant covers up to $65,000 for one year. Proposals must be PH-related research projects that have been favorably reviewed for a National Institutes of Health Early Career Award (K award) but not funded. The award provides bridge funding so the project can generate sufficient preliminary data to make it highly competitive when resubmitted to NIH. The 2023 recipient was:
Roopa Siddaiah, MD
Penn State College of Medicine
“Predictors of Pulmonary Hypertension Associated Bronchopulmonary Dysplasia.”
FUNDING COMMITMENT
$305,000 INCREASE IN FUNDING 14%
GIVINGTUESDAY
$94,884
FUNDRAISING EVENTS 26
DONATED IN FUNDRAISING EVENTS
$326,732 TOTAL DONATIONS
$4,953,103
‘We can attest to the educational benefit this process had for our team and hospital system as a whole.’
ASHWIN RAVICHANDRAN, MD
PHCCS PARTICIPATING IN PHA REGISTRY
NEWLY ENROLLED PATIENTS IN PHA REGISTRY
Advancing PH Understanding To Enhance Patient Care
More than 600 health care professionals attended the Pulmonary Hypertension Association’s PHPN Symposium Sept. 28-30, 2023, in Arlington, Virginia. Attendees came from nearly every state and several countries, including Lebanon, Saudi Arabia, Germany and France.
Themed “PHoundation for a Brighter Future,” the symposium allowed attendees to advance their PH knowledge to apply to their practices, as well as connect with other PH-treating professionals.
“It’s really helpful to hear about [providers] working with patients,” says first-time attendee Bree Keller, a research nurse at the University of Colorado. “When I see those patients later, I’m already on the same page as my team. I’m ready to serve my patients in the best way I can.”
Marc Humbert, MD, PhD, director of respiratory and intensive care medicine at the French Pulmonary Hypertension Reference Centre, was among the speakers. He shared the 2022 European Society of Cardiology and European Respiratory Society guidelines for PH treatment and diagnosis. Humbert, the primary author of the guidelines, shared early detection strategies, therapy recommendations and new ways to assess patient risks.
“[The symposium] helps you reset yourself,” says fifth-time attendee Denise Lewis, a pulmonary hypertension nurse at George Washington University. “When you get back to your practice, you take a step back and analyze everything you picked up, and then try to incorporate it. You incorporate the things you appreciate, the things you know are going to take your patients’ care to the next level.”
As part of the symposium Advocacy Day, more than 80 health care professionals and PHA staff visited legislative offices on Capitol Hill to educate Congress about PH and patients’ needs. They asked senators to support the Safe Step and HELP Copays acts and proposed legislation to improve supplemental oxygen access.
“[Lawmakers] need to know that our patients are suffering,” says third-time attendee Robert Scott, a cardiologist at Mayo Clinic in Arizona. “They need to know that our patients have difficulty getting access to effective medical therapy, are underinsured or oftentimes can’t afford to continue their medications because it’s too expensive. Anything we can do to raise awareness is a step in the right direction of attaining accessible health care.”
Pictured above: Parvati Gopalan, DDS, Sonny Gopalan, DDS. Health care professionals network with exhibitors and colleagues in the exhibit hall.
Cheri Abbott, RN, former PHPN Executive Committee chair, with Marc Humbert, MD.
Left: Denise Wilson, RN.
2023 PHA Board of Trustees and Industry Partners
OFFICERS
Tony Lahnston, chair
Traci Stewart, RSN, CSN, CHFN, chair elect
Nicole Creech, treasurer
Colleen Connor, secretary
Colleen Brunetti, MEd, CHC, immediate past chair
Matt J. Granato, LLM, MBA, president and CEO, ex officio
TRUSTEES
Todd Bull, MD
Murali Chakinala, MD, FCCP
Ramona Doyle, MD, MSc
Anna R. Hemnes, MD
Kimberly Jackson, RN, BSN
Mitch Koppelman, PhD
Michelle Ferdinand Liu, MD, MPH, FAAOA
Mike Lentz
Melissa Magness, MSN, APRN, CNP-AC
Mike Naple
Monica M. Penaranda
Diane Ramirez
Doug Taylor
Matt Wall
Delphine Yung, MD
EMERITI EX OFFICIO
C. Gregory Elliott, MD, FCCP, MACP
Michael D. McGoon, MD
Edwin Simpson
Judith Simpson, RN, EdS
HONORARY
Carl Hicks
SCIENTIFIC LEADERSHIP COUNCIL
Anna R. Hemnes, MD, chair
Todd M. Bull, MD, chair-elect
Murali M. Chakinala, MD, FCCP, immediate past chair
Eric D. Austin, MD, MSCI
Sonja Bartolome, MD
Vinicio A. de Jesus Perez, MD, FCCP
Teresa De Marco, MD
Ankit A. Desai, MD, FACC, FAHA
Jeffrey Fineman, MD
Robert P. Frantz, MD
Mardi Gomberg-Maitland, MD, MSc
Daniel Grinnan, MD
Gustavo A. Heresi, MD, MSci
Kristin B. Highland, MD, MSCR
Nicholas Kolaitis, MD, MAS
Matthew R. Lammi, MD, MSCR
Peter Leary M.D., PhD
Deborah J. Levine, MD
Wes McConnell, MD
Lana D. Melendres-Groves, MD
Josanna Rodriguez-Lopez, MD
John J. Ryan, MD, MB, BCh, BAO
Sandeep Sahay, MD
Thenappan Thenappan, MD
Anjali Vaidya, MD, FACC, FASE, FACP
Nidhy Varghese, MD
Corey E. Ventetuolo, MD, MS
R. James White, MD, PhD
DISTINGUISHED ADVISERS
David B. Badesch, MD
Erika S. Berman Rosenzweig, MD
Bruce H. Brundage, MD
Richard Channick, MD
C. Gregory Elliott, MD, FCCP, MACP
Karen A. Fagan, MD
Michael D. McGoon, MD
Vallerie V. McLaughlin, MD
John H. Newman, MD
Ron Oudiz, MD
PH PROFESSIONAL NETWORK
EXECUTIVE COMMITTEE
Kimberly Jackson, RN, BSN, chair
Cheri Abbott, RN, CCRP
April Blakley, RN, BSN
Jessie Dunne, PharmD, BCPS, BCCP
Loida A. Johnson, CRNP
Tisha Kivett, RN, BSN
Melissa Magness, MSN, APRN, CNP-AC, chair-elect
INDUSTRY PARTNERS
Our industry partners recognize the Pulmonary Hypertension Association as a leader in the PH community. These companies make a difference year-round through their generous corporate giving, volunteerism and fundraising. They know that a strong PHA means a vibrant and empowered PH community. We thank them for their commitment and recognize them here, based on their funding support.
Accredo
Aerovate Therapeutics
Aria CV Bayer
CVS Specialty
Gossamer Bio
Halo Biosciences
ICU Medical
Insmed
Johnson & Johnson
Keros Therapeutics
Liquidia
Merck & Co. Inc.
Respira Therapeutics
Sumitomo Pharma America
Synergen RX
United Therapeutics Corporation
Vision Health
Walgreens RX
ABOUT THE Pulmonary Hypertension Association
Headquartered in Washington, D.C., the Pulmonary Hypertension Association is the oldest and largest nonprofit patient association dedicated to the pulmonary hypertension community. PHA’s mission is to extend and improve the lives of those affected by PH.
PHA engages people with PH and their families, caregivers, health care providers and researchers, who work together to advocate for the PH community, provide support to patients, caregivers and families, offer up-to-date education and information on PH, improve quality patient care, and fund and promote research. For information, visit PHAssociation.org.
PHA’s mission is to extend and improve the lives of those affected by pulmonary hypertension. PHA’s vision is a world without PH, empowered by hope.
301-565-3004
Support Line: 800-748-7274
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